Presentation at Medicine X Stanford 2012
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Presentation at Medicine X conference held at Stanford La Ka-Shing conference center 29-30 september 2012 with the title: Using computer tablets to empower breast cancer patients undergoing radiation therapy treatment
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Presentation at Medicine X Stanford 2012
- 1. Using computer tablets to empower breast cancer patients undergoing radiation therapy treatment better informed patients better informed staff Martin Östlund
- 2. What the project is about Overview Using computer tablets to support patients undergoing radiation therapy • Breast cancer patients borrow tablet during course of treatment • Patients use tablets to inform themselves • ... and to supply feedback to staff • Co-operative project • Oncology dept Kalmar County Hospital • eHealth Inst Linnaeus University
- 3. What we hope to achieve Objectives By using tablets as information, communication and administrative devices we hope to achieve: • Better informed patients • More involved patients Empowerment • Individualized care • Improved patient safety • More satisfied patients
- 4. Timeline information communication treatment radiation rehabilitation
- 7. What did the patients think The Patients Impressions, benefits and pitfalls method • Better informed • better prepared • Acceptance rate • reduced anxiety, increased confidence • 10 out of 11 patients and trust borrowed tablet • More involved • May-June 2012 • active patients | option to be active • Interviews • The tablet – enabling device • 6 out of 10 patients • in-depth, semi- • easy to use – easy to get started structured, exploratory • safe starting point • “my own” • too late…
- 8. What did the staff think The Staff Impressions, benefits and pitfalls method • Questions from patients • questions more relevant • Interviews • questions go deeper • medical staff • patients more involved • technical staff • Staff benefits • in-depth, semi- • responsiveness structured • immediate/short delay feedback • catch mood • team involvement • Pitfalls • anonymity limits usefulness • boundaries between units
- 9. Central points Conclusions Success factors and major findings • Be specific, be relevant • illness-specific, clinic-specific • video much appreciated • Ease-of-use critical • getting started… getting going • tablet as enabler • Timing • waiting-time is the worst time… • make available early • Empowerment • informed patients • inquisitive patients • active patients – having the option… • empowered?
- 10. Next step www.jmir.org: Vol 13, No 3 What’s next… Planned development and on-going work • Continued clinical use • all new breast cancer patients get offer (30- 40 patients expected until end of year) • get tablet earlier • New features to benefit patients • secure messaging • social layer – live advice-giving/guidance • administrative tools – scheduling • New features to benefit staff • Collecting patient data (non-anonymous) • Surveys • Messaging • administrative tools – frees-up time
- 11. Oncology department Stefan Johnsson PhD project leader Kalmar County Hospital Magnus LagerlundMD oncology specialist Ingela Widell counselor Camilla Wilde-BjörlingRN oncology nurse Göran Petersson MD PhD director eHealth Institute Clara Axelsson BSc interaction designer eHealth Institute Emil JohanssonBSc developer Pauline Johansson PhD stud medical science researcher Marcelo MilradPhD mobile learning specialist Martin ÖstlundMSc PhLic interaction specialist Former patients providing input and feedback Patients Current patients evaluating system, suggesting improvements Future patients empowered… martin.ostlund@lnu.se www.ehalsoinstitutet.se
Hinweis der Redaktion
- The basic idea in this project is to use tablets – in our case starting off with iPads, but any portable ”smart” device will do – to use tablets to improve the quality of care – true quality and experience of quality – for cancer patients undergoing adjuvant radiation therapy for cancer. I should add that I am not medically trained but contribute to the project as an interaction specialist. Adjuvant, so I’m told, means additional in the sense of the radiation therapy following other treatment, typically surgery or chemotherapy, for the purpose of reducing the risk of recurrance of cancer. The tablets will be used to disseminate information and facilitate communication – and also help with administration for both patients and personnel – to produce: better informed patients and better informed staff.
- Theproject I am presentinghere today is aboutexploring the usefulness of computer tablets as a way of supportingbreast cancer patients whileundergoingradiationtherapytreatment.Breast cancer patients get to borrow an iPadduring the course of theirtreatmentTheyuse the tablet to informthemselvesAnd to informstaff by providing feedback and filling in survey dataThe project is a joint projectbetween the oncologydepartment at Kalmar County Hospital and Linnaeus University. Kalmar County Hospital is a regional hospital servingabout 100 000 inhabitants.
- Whatwehope to achieve in the long is the followingBetterinformed patients – thatknowwhattheyneed to know, knowwhattheywant to knowMoreinvolved patients – inquisitive and active patients that partner up with medicalstaff in a commonprojectIndividualizedcare – not onesizefits all – customizedcare to suit the individualneeds and wants of each patient - medicallybutalso with regards to preferencesKnowingmore, getting involved and having a saytranslatesintoempowerment for patientsImproved patient saftety – getting the right information from patients on time and in time to make adjustments – adapting to real needs of patients, medical and preferentialMoresatisfied patients – patients getting bettercare and a betterexperience of care. Important to boostconfidence and energylevels to cope. Alsomoresatisfiedstaffbecausetheyhavebettertools to serve patients better.The results I will present here today are from the first stage of the projectwerewehavecreatesomebasic information and communicationresources and had 10 patients usethem via theirborrowediPadwhilereceivingradiationtherapytreatment.
- Diagnosis – start treatment as quickly as possible. Radiationtherapycan be the only form of treatmentbut is usuallypreceeded by surgery and sometimesalsotreatment with cytostaticdrugs. Radiationtherapykills of remainingcancerous cells by administering small dailydoses of radiation over a time period of 3-5 weeks. The currentprojectwasinitiated by the radiationtherapyunit and radiationtherapy is what it focuses on. Wesupply patient with a tablet computer - an iPad - beforethey start treatment. Theyuse the iPad toInformthemselvesaboutbreast cancer and whatradiationtherapy is -- general information about the clinic-- general information about the type of radiationtherapyperformed at the clinic for treatment of breast cancer-- specific information aboutwhathappensbefore, during and after treatment-- video films demonstratingwhathappens in the preparatory visit and duringtreatment-- information aboutpossiblesideeffects-- questions and answers – FQA-- externallinks to approved and checkedwebsites – relevant and correct – relevant for theirillness and treatment and correct in theirfactualcontent. And to communicate with the different peopleinvolved in theirtreatment-- via surveys-- and page comments and discussion forum (so far)The iPad provides access to a securewebsitecontainingillness- and treatment-specific information. The information is alsoclinic-specific with all the materials produced or selected by the staff and all the images and videos are from the actualclinic. Patients alsouse the iPad to answersurveysbefore and after treatment starts and once a weekduringtreatment. The results are compiledautomatically and madeavailable to the nursingstaff.The patients canalso ask questions via a discussion forum, againonlyavailable to the patients at the clinic with answersprovided by the staff at the clinic.
- Diagnosis – start treatment as quickly as possible. Radiationtherapycan be the only form of treatmentbut is usuallypreceeded by surgery and sometimesalsotreatment with cytostaticdrugs. Radiationtherapykills of remainingcancerous cells by administering small dailydoses of radiation over a time period of 3-5 weeks. The currentprojectwasinitiated by the radiationtherapyunit and radiationtherapy is what it focuses on. Wesupply patient with a tablet computer - an iPad - beforethey start treatment. Theyuse the iPad toInformthemselvesaboutbreast cancer and whatradiationtherapy is -- general information about the clinic-- general information about the type of radiationtherapyperformed at the clinic for treatment of breast cancer-- specific information aboutwhathappensbefore, during and after treatment-- video films demonstratingwhathappens in the preparatory visit and duringtreatment-- information aboutpossiblesideeffects-- questions and answers – FQA-- externallinks to approved and checkedwebsites – relevant and correct – relevant for theirillness and treatment and correct in theirfactualcontent. And to communicate with the different peopleinvolved in theirtreatment-- via surveys-- and page comments and discussion forum (so far)The iPad provides access to a securewebsitecontainingillness- and treatment-specific information. The information is alsoclinic-specific with all the materials produced or selected by the staff and all the images and videos are from the actualclinic. Patients alsouse the iPad to answersurveysbefore and after treatment starts and once a weekduringtreatment. The results are compiledautomatically and madeavailable to the nursingstaff.The patients canalso ask questions via a discussion forum, againonlyavailable to the patients at the clinic with answersprovided by the staff at the clinic.
- Diagnosis – start treatment as quickly as possible. Radiationtherapycan be the only form of treatmentbut is usuallypreceeded by surgery and sometimesalsotreatment with cytostaticdrugs. Radiationtherapykills of remainingcancerous cells by administering small dailydoses of radiation over a time period of 3-5 weeks. The currentprojectwasinitiated by the radiationtherapyunit and radiationtherapy is what it focuses on. Wesupply patient with a tablet computer - an iPad - beforethey start treatment. Theyuse the iPad toInformthemselvesaboutbreast cancer and whatradiationtherapy is -- general information about the clinic-- general information about the type of radiationtherapyperformed at the clinic for treatment of breast cancer-- specific information aboutwhathappensbefore, during and after treatment-- video films demonstratingwhathappens in the preparatory visit and duringtreatment-- information aboutpossiblesideeffects-- questions and answers – FQA-- externallinks to approved and checkedwebsites – relevant and correct – relevant for theirillness and treatment and correct in theirfactualcontent. And to communicate with the different peopleinvolved in theirtreatment-- via surveys-- and page comments and discussion forum (so far)The iPad provides access to a securewebsitecontainingillness- and treatment-specific information. The information is alsoclinic-specific with all the materials produced or selected by the staff and all the images and videos are from the actualclinic. Patients alsouse the iPad to answersurveysbefore and after treatment starts and once a weekduringtreatment. The results are compiledautomatically and madeavailable to the nursingstaff.The patients canalso ask questions via a discussion forum, againonlyavailable to the patients at the clinic with answersprovided by the staff at the clinic.
- Westarted with 10 patients in late spring. Out of 11 patients offered the tablet, 10 accepted. Our initalconcern that the 55-70 yearolds in this group might be wary of using a techdevicewereshown to be totallywrong – no technophobiathere! Patients got the tablet at their first visit at the radiationclinicabout 1 and a halfweekbefore the first radiation session. At this visit a specialist nurseinforms the patient about the treatmenttheywillreceive. This wasdoneusing the tablet to demonstrateitsuse and also so that theyknewwere to go to refreshtheirmemory. Out of the 6 patients who participated in the interviews all were positive abouttheirexperience with the tablet. Theyfelt the information resourcesmadethembetterprepared and less anxiousbeforetreatmentstarted, duringtreatment and after treatment. Theyespeciallyliked the video films that allowedthem to seewhat the treatmentroomslooked like, what the machineslooked like and howthey work, what is expected of them – the patients - whenreceivingtreatment. And finallytheyappreciatedseeingsome of the personnel from the clinic - to put a personal face of it. Actually a specificrequestwas to have a personnel page to introduce the personnel.This was not an intervention study so wehave no control group to compare with, but patients saidtheyfeltbetterprepared and less anxious AFTER using the tabletindicating that it wasuseful in this respect. Alsounderscoring this, the nursingstaffnoticed a difference in the type of questionstheywere getting and the attitude of patients.The tabletencouraged patients to be active. Several patients said that theyhadn’tplanned to search the net for more information beyondwhattheyhadlearned at theirdoctor’s visits - actuallyseveralsaid that theyhadplanned NOT to do that to avoidscaringthemselve. The easy accessibility to and ease-of-use of the tablet got themstarted – and oncetheyhadstartedtheykept on going, somealsogoing on to the externallinks and beyond.Whattheyappreciatedmostwas that the tabletprovided a starting point – a safe, non-overwhelming and convenient starting point. It presentedthem with an option. Learningmore and beingmoreinvolved is withinreach – it is not toodifficult and not tooscary. Thus is can be seen as an empowering of the patient who evenifshechooses not to take this option is empoweredknowing that the option is thereiftheywant it.The patients got the tablet 1 and a halfweekbeforetreatmentstarted. Theywanted it earlier. Many of the patients described the waiting periods as theirworstexperience. During the treatment period with dailyradiation sessions it was all action and less time to reflect – and less time to worry. But in the waiting period betweensurgery/cytostatictreatment and radiationtherapy, theyfeltalone and vulnerable – and heretheywelcomedbeingable to self-inform and to ask questionsusing the tablet. And this wasone of the criticismtheyhad – theywanted the tabletearlier – as soon as possible.
- The staffnoted a difference in the types of questions the iPad patients asked. Theywerebetterprepared and askedquestions that were of greaterdepth. Goingintomoredepthaboutdetails and the options open to themmade patient, by definition, becomemoreinvolved. Staff felt that the time theyhad set aside for patient consultationwasput to betteruse – by beingmorefocused on importantissues and less on practicalperiferalissuessuch as scheduling and bus timetables.The surveys patients filled in weredigitally processed and thusimmediatelyavailable to staff. This replacedearlierpaper-basedevaluations that wereevaluatedtwice a year. The digital alternative makes it possible to reactimmediately. If patients are unhappyaboutsomething action can be taken and a changecan be madeaffecting the actual patients, ratherthanbenefittingfuture patients only. Unfortunately, althoughweuse a secure and encrypted system, we are not allowedlegally to collectidentiable data in this way. This limits itsusefulnesswhen it comes to reacting to individualneeds – and that is ourgoal – to provide individualisedcarebased on individualpreferences. In this version wecanonlycollectanonymous data. This is useful to catchmoods and to identifythings that can be changedimmediately. But to be useful in individualisingcareweneed to be able to collect patient specific data. Fortunatelythere is a national project in Sweden in which an infrastructure has beencreated for the safe and securecollection of patient data. Wehope to implement this in future versions.One unexpected positive side-effect of the project has been the way it bringstogether the variousprofessionalsinvolved in the care of a breast cancer patient. The tablet has worked as a unifying force bringingfocus to the patient – not the tablet, but the patient – and for all involvedpeople to focus on the patient’sexperience as shetraverses the system. However, this is so far onlytrue of the team involved in radiationtherapy. For the patient theirexperience is not dividedintoneatorganisationalunits. Our aim is to try to use the tablet – or rather the content and services it gives access to - to ease the transitionsthrough the system for the patient and helpkeep the focusfocused on the patient and the patient’sexperience – and trying to make this as good as possible.
- To be useful information resourcesneed to be relevant for the target group – theyneed to be illness-specific and webelivealso that theyshould be clinic-specific as far as possible. General information – sayproduced by a central authority – cancertainly be helpful, but to trulyengender trust and confidencewebelieve that the closer to homeonecan be, the better the result. And actually it isn’t that hard to do and isn’t that expensive. Toomuch information is not a goodidea. Describingeverydetail is overkill and willonly serve to overwhelmeveryonebut the mostknowledge-hungry. Better to focus on the main points whichapply to and interesteveryone. Special cases are better handled as theyoccur and they are better handled throughdialogue. Wehave a handful of pages of text with accompanyingphotographs taken by the staffthemselves. The video wasshoot by a localproductioncompany to avoidtoomuchamateurishness. The costwasabout $3000 includingediting and narration. Except for the video the contentcan – and should be produced and maintained by the staff – so that it is localised and relevant.Bridging over in movebetweenunits.
- All new breast cancerpatients at the oncologyClinicwill be able to borrow an iPad – we are expected this will be 30-40 patients until the end of the year. The new patients will get the tabletearlier – theywill get the tablet as soon as it has beendecidedtheywillreceiveradiationtherapy, which is about 3-5 weeksbeforetreatment starts (compared to 1 and a halfweekbefore).Wewill start addingmore services.Wehope to integratesecuremessaging and secure data collection by integrating My healthcarecontacts features.This willallowI willpersonally be working with social layer features. In an earlierproject of mine I created an installation-freeco-browsingfree system for distanceadvice-giving on the use of complexpharmaceuticalproductssuch as inhalers and injectiondrugs. For those of you interested to knowmoreabout this project you canhave a look at this JMIR article. For the breast cancer patients this will be implemented as a social layerguidance system where patients canreceive live guidancethrough the tablet with nursingstaff and counselors. This will be used to provide factual and emotional support for patients through the waiting periods.We are alsolookingintoautomatingschedulingfunctions, which today takeaway a lot of valuablepatient-nurse time.